The Adventures of Norah… and Sasha

24 September 2021 | Smile Train

Children's book author Sasha Cooper is the mother of Norah, a little girl who was born with a cleft. Below, she shares her most fantastical tale of all: The true story of how she went from feeling lonely and angry at the way her daughter was treated to outspoken advocate for the #CleftProud community.

I can't remember the exact number of weeks pregnant I was when I found out that Norah would have a cleft. However, I do remember that receiving the news happened through a twofold process.

First, my husband and I knew something was off when we went to the doctor to learn our baby's sex. The ultrasound tech and the doctor kept looking at the image on the screen over and over again without telling us why. But the doctor was not our regular doctor that day, so we learnt the sex, but were left confused.

A few weeks later, I went to my regular doctor, and the same thing happened — the tech kept going over the ultrasound with a worried look on her face. This time I was alone. I finally asked what was wrong, and she told me she had to get the doctor. The doctor came in, mirrored her look, then said, "Yep, it's a cleft."

I had never even heard of that before, so I sat puzzled. He went over what a cleft was, then said, "I need you not to go on the internet." So, naturally, that was the first thing I did.

What I saw online made me think the doctor was right. They were not welcoming images. I was scared and thought I had done something wrong. I began to bargain with God; I prayed for a week. I never cried, but I was sad, and I worried about how my baby would be treated — I mean, this was something on her face. It could not be hidden.

Norah before cleft surgery

But when Norah was born, I saw that she was perfect. Just absolutely. Completely. Perfect. At that time, I had this saying: I still love you the same. I would go out, and people would look at her with pity or stare, so I would just tell her: I love you the same.

To Be a Cleft Mum is to be a Warrior

I'm sorry to say that the biggest stress in my life then wasn't Norah's cleft or brownnosers on the street; it was my own family. All of a sudden, they were all experts on cleft lip and palate. It was so exhausting listening to them sometimes, with all their beliefs in superstitions and curses — even the younger, more educated ones! I was angry then. I felt alone defending Norah, repeating to her own relatives that she isn't cursed. She is my blessing.

Norah with a birthday cake

Being a cleft mum means I am Norah's first advocate and supporter through everything, the battery that keeps her going. And through it all, my message to her never changed: I love you the same.

Norah being held by her brother

When Norah turned two and became more aware, I looked everywhere for a book to teach her about her cleft but couldn't find any. So I wrote my own and called it I Love You the Same. It didn't have any pictures at first, just my words to my daughter. I showed it to my friend Alisha, and she said to publish it. Suffice to say, my family was not as encouraging, so I sat on it.

Learning the Writer’s Life

I felt that story's presence in my computer for the next two years. Every time I had a difficult interaction about her cleft, I thought of it. Any time I wished people knew how special Norah is, I thought of it. Finally, when she was four, I learnt Amazon has a self-publishing platform, so I just did it. In truth, I did it for both of us — I needed to prove to myself that I could, and since I am Norah's first teacher, I wanted her to see an example of setting a goal and achieving it.

Norah holding "Love You the Same"

Well, I thought I'd put it out there and it would be a bestseller, but it didn't happen that way. What happened instead was that it became an even more valuable learning experience. It taught me that if you want to write a book, you have to read it carefully for grammatical errors, buy your own ISBN, set up social media accounts and a website to help promote your work… in other words, it taught me that everything takes time. But I loved every bit of it because it was for Norah.

Norah wearing big sunglasses and playfully hiding behind a couch

Still, even after all that work, no one bought it. Well, almost no one.

Chickens, Pirates, Unicorns, and the Best Community Ever

Have you ever gotten knocked down, and someone came and told you it would be okay, I'm here for you, and then show up for you every time? That is what the cleft community is to me. They need no explanation of why I am tired or triggered by something or certain words. Others see strength and courage, but they see the bruises, worrying, tiredness, and hurt associated with this journey. They hold my hand and walk me through it with a smile on their faces. They mean everything to Norah and me, and I have overcome so many hurdles because of them.

Norah holding "The Adventures of Norah"

Just when it seemed no one would ever read my book, a cleft mum reached out to me and encouraged me to keep going, and that was all I needed. It wasn't hard to decide what my next project should be — Norah is a ball of energy, and her imagination is wild, vivid, and wonderful. I knew I just had to share it, so I decided to follow Norah around and record her stories, and that became the first instalment of The Adventures of Norah.

Cover of "My Unicorn Katie"

With those two down, and with all the positive feedback I've gotten since, I was not about to slow down. My next book was The Adventures of Norah: My Unicorn Katie, based on one of Norah's previous speech teachers. When Norah told me she is going to be a policewoman and a doctor to help kids like her, that excited me so much that it inspired the two books I'm currently working on: Norah and the Chicken Police and Let Us Be Pirates. In each book, I want to fight the stigma against people with clefts and remind my baby that she can do anything, that her cleft doesn't have to be her hindrance — it can be her superpower!

Norah on her fifth birthday

And I'm not stopping with books. I want to redo my website soon to make it more interactive, with games, puzzles, and other things that will make learning from the books even more fun.

Norah licks a spoon on a hot summer day

These projects take a lot of energy, and I've had to pay most of the expenses that come with them out-of-pocket. But I don't mind because it has become my passion, and what little profit I have made I've been able to donate to Smile Train to help even more children with clefts live their dreams.

The Moral of the Story

I hope everything I do teaches Norah to become a voice in the cleft community. She already knows her background and tells her story well. It amazes me to listen to her — over the summer, I got a voicemail from Norah and her cousin where they were saying the things that made them different, and in the end, Norah said, "It's okay that we are different." That got me emotional. I feel as if she was born to help those who come after her with a cleft, and I want her to educate others, especially those in her parents' birth countries of Jamaica and Ghana, where birth differences are often seen as a curse. And, of course, I will be there the whole way to teach her and help her participate in cleft-related things.

Norah with Smile Train's "9 Reasons to Smile Activity Book" last summer

I've written a lot of books about it now, but I'd say that really my message to Norah, and everyone else with a cleft, is simple: Your strength is beautiful. Your smile is beautiful, and you will always be radiant. And to their mums, I say that you are your child's strength. You are their advocate; don't obsess over the negative, instead hug them on good days and bad. Remind them that they are resilient and that there is much more to them than their cleft. Most importantly, tell them daily that you love them.

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